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Raising funds for another orphan disease

Thursday, August 21, 2014

Our family has watched the amazing awareness and donations being made of and for the awful terminal disease, ALS (Amyotrophic lateral sclerosis), and have been very excited for the ALS community.

While Brian and I do not know anyone personally who suffers from the disease, we do personally know how big it feels when someone does something so little, whether they know what ALS is or whether they even care.  ALS is now a more widely known disease due to all the publicity.  The ALS Association has received more money in donations than ever before.

While our hearts yearn to see this kind of awareness and care for Cystic Fibrosis one day as well, we are thankful that others who share a similar grief are benefiting - in hopes that one day, they, too, will have a cure in hand.

In many ways, Cystic Fibrosis and ALS are nothing alike.  But, in some ways, they are very similar.  I thought I'd share a few things about ALS that feel similar to our own struggle with CF.

* Both ALS and CF are considered "orphan diseases" and have historically received very little attention or research by pharmaceutical companies.
* Both ALS and CF have about the same number of people affected in the US: 30,000 each.
* Both ALS and CF, in late-stages of the disease, end with respiratory failure and death.
* Both ALS and CF are progressive and have currently have no cure.

Yesterday, Oliver was challenged by a little girl in his first grade class to participate in the #icebucketchallengeforALS.  I spoke with Oliver about the disease so he understood why he was being asked to pour cold water on his head.

I explained that ALS, like CF, has no cure and causes the body's muscles to slowly stop working.  I said, "people who have ALS eventually lose their ability to walk...to move their hands...to talk or eat...even breath."

I stopped there and hadn't planned to go on.

But Oliver filled in the rest: "...and maybe they will die."

I said, "yes, they often do."

I explained that in the same way that our family tries to raise money for a cure and tremendously appreciates when people who care about us gives money for CF, we want to do that for others who need a cure.

Today our family donated money to the ALS Association and hope our fellow "orphan disease community" will soon see their cure.

CF is nothing like ALS and, yet, our grief and desperation for a cure, is.

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